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Casey’s Story

Site created on July 2, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place.

First of all, I would like to offer my apologies for the delay in setting this up; I know all of you who care about Casey are anxious to know more and follow his progress. Now that we have a manageable way to communicate, please check back often for updates and additional information.
Following is the history and story of Casey's Ticker to help you better understand his situation.

Casey was born with severe aortic valve stenosis. The term “stenosis” describes an abnormal narrowing within a structure of the body. Aortic valve stenosis, therefore, refers to the narrowing of the heart’s aortic valve, a one-way valve located between the left ventricle — the pump that pushes blood out to the body — and the aorta, the major blood vessel that carries blood to different parts of the body. When a child has aortic valve stenosis, the leaflets (tiny flaps of tissue) that make up the aortic valve get stuck and can’t separate fully. This causes a problematic blockage that increases the pumping work of the left ventricle, and may lessen the amount of blood that goes out of the ventricle to the body through the aortic valve. This extra work can weaken the heart over time.

When he was nearly 4 years old, he and his parents traveled to Boston Children’s Hospital where he had open-heart surgery to repair the narrow valve. Casey describes the repair process with a with a smile, stating “The surgeon picks the right gauge of his 5 fingers, jams it in the hole and wiggles it around to stretch the valve tissue. Very scientific…”. That was a long time ago though, so they don't quite do that anymore.

In the years following his initial repair, Casey had several follow up appointments, tests, catheterizations, and annual visits back to Boston Children’s Hospital. He recovered and grew normally into adulthood, living life fully, doing all things he enjoys without worry.

In June 2018, a visit to Dartmouth Hitchcock cardiology, it was discovered that his heart is working harder than ever to accommodate the aortic valve, which, with age and his health history, has narrowed to a dangerous level. In early July 2018, Casey took leave from family vacation in far northern New Hampshire to travel to Boston to meet with his long-time cardiologist, Dr. Mike Landzberg who agreed that the surgery should be completed sooner rather than later. Since Casey’s open-heart surgery in 1978, he’s been aware that, in the future, he would likely need the valve replaced. He had hoped to put that surgery off for as long as possible, and 40 years later, the time has come.

This site will enable you all to keep up to date on the events that take place pre-operation, during his surgery and hospital stay, as well as throughout his recovery.

We appreciate your support and words of hope and encouragement greatly. Thank you for visiting.

Newest Update

Journal entry by casey grigsby — Sep 24, 2018

Thank you everyone for being interested in my journey the past few months. Fortunately, this chapter in my life is nearing a happy conclusion.

I am attending cardiac rehabilitation 3 days per week and will continue until early October after which I'll exercise on my own. I'm in the best physical condition that I've been in for at least 5 years and have lost over 20 pounds since this all began. Over the next couple of months I'll continue to add more weight training into the mix as my lifting limitations are reduced. I still grimace a bit when I lift or twist the wrong way but that's to be expected.

Over the past two weeks I visited with my Cardiologists in Boston and at Dartmouth. Everyone is in agreement that the valve is functioning very well and that my prognosis is great. The lasting impacts to my lifestyle are quite minimal... I need to manage my blood thinners and take antibiotics before seeing the dentist - that's it! Both Cardiologists agree that I'm ready to resume most activities, including work - I'm returning this Thursday. I have been out of the office for just over 10 weeks so it will take a bit of time to get caught up but I'm excited to get back to normal.

I want to thank all of my family and friends for helping me through this adventure. Everyone played a role: housesitter, lawn mower, trash hauler, chef, arborist, nursemaid, caterer, dog sitter, medical advocate, chauffeur, babysitter...the list goes on. Finally, Amanda needs a special award for putting up with me through all of this. Unlike most others, she had the distinct honor of helping me through the dark times and with all sorts of grotesque bodily fluids and functions. I'm VERY lucky to have her in my life!

Casey

Read More of the journal titled "This Chapter is Just About Over"

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